Hello...as you can tell your not alone...there are many lupus old timers...LOL....I have had it since 1983....Now I am proud to say I also have had ITP, Sojgrens, Raynauds and Addison's disease to go along with it...so no you are not alone...what I am thankful for is that I have learned my body inside and out I know what works and what doesn't ...you just have to listen...and I have learned PATIENCE, you see I never had that before I had lupus however now I do....Now on my list is Strokes ..yes I have been getting strokes/TIA's from my lupus and blood clots to the lungs...hey but life goes on....I am not ready to go ...I will tell it when I am ready it will not tell me...Good luck to you all and bless you....I and so many other sister and brothers know exactly how we feel each and every day and a big thanks to Ben's friends for the support we get...
So Lone, tell us your secret! What do you think it is that keeps you able to do so much? I know everyone is different, but is there some combination of drugs that works best for you that keeps you going?
Hi Hopeful,
Welcome to the site. I love your online name, hope is my theme for the year and I am holding tightly to the hope I have in my friend ans Savior Jesus Christ.
I am a new lupie just recently diagnosed in April of this year, although dealing with symptoms for about 3 1/2 years and diagnosed with Fibro in 2003. Thank you all for sharing the encouraging words from those of you who have been around the block, several times at that. It is encouraging to know that others are living and thriving despite their lupus.
25 years...take one day at a time. Learn your own body. Rest when you need too, and keep a stiff upper chin. We're all in this together.. Fell better
Hi Hopeful, Welcome to the site. I am a 25 year lupie. Ive never personally met anyone with lupus, so this site means alot to me. It lets me know we are not alone. Again WELCOME to the site.
Hi there,
Yep- I have had symptoms of lupus since age 15- now 38 1/2 (Ha! Was told I wouldn’t see 38 if I didn’t to a trial med- but I’m in a major flare (3rd really big one- worst yet- the trial helped in some areas, but made me a heck of a lot sicker than the benefits - tore apart my family- sad…) in and out of hospital, now onto Mayo Clinic Friday- been hanging on to see my one and only 5th grader graduate- I was formally diagnosed in 2000 w/ a biopsy, but past 2 years have been flat out awful- when I need help the most, my family is “over it”- never asked for this disease and have seizures, so I’m dependent on others… Hate that- not for me! Tooooo independent for this…Husband’s needs “weren’t met”- refuses to take me out anywhere (we have been together since HS! “Through sickness and in health??”) I’m the only care giver who is on care giving .com- odd!
I keep telling my family that I AM MORE THAN JUST A PATIENT!!! They mean well, but affordability of Mayo has to be considered- was planning on going July, but my body is covered with lymph nodes, can’t get beyond 92 lbs and I am sick- but mother and husband have been physical w/ me (??? Um, what! ).
I am doing everything possible to get well- and give my family a break- but they are taking that as me cutting them out- not the case…
They are convinced that I have an eating disorder- I do not- I’m usually 140 lbs- very discouraging when you do your best, and are accused of not taking care of myself- sad their support is conditional! They think I’m nuts because I would rather holistic treatment at this point- but some days I literally can’t move.
But…God will never give us more than what we can handle- I believe this, but enough already!
Xo
Hopeful
I’ve had symptoms and a positive ANA since I was 5 and that was 38 years ago.
I’ve had lupus since I was 6. I’m now 31. I have a lot of medical problems that have come from lupus as well. It definitely becomes difficult to keep friends with all these issues. The good ones will always stay though. I’ve also lost the ability to do the things I used to. It sucks to lose so much, but I’m still alive and that definitely counts for something. You’re not alone here. 
Hi Hopeful....I have Lupus for 42-43 years now....unreal isn't it....when I was 16 I was diagnosed and back then in 1971 they had no hope of me living past 40 years of age....well I am 58 and doing well right now...I can tell you I went though hell and back then back to hell and back many times and I am still here....I am a happy person by nature and when first told I was at first reckless but then settled in and learned how my body works...everyone has Lupus in a different way and we suffer without anyone knowing how bad....I don't want to tell you what I have been through because you already know it yourself....Right now I am doing good...staying out of the sun and trying hard not to stress....when I was 16 and I got the news I loved being outdoors and tanning....back then the sun was not such an enemy to people as it is today and I often got teased not being able to go in the sun...I am very sun sensitive....I worked most of my life but lost my first real job because of Lupus....they gave me a physical and I told them and they fired me right on the spot....learned my lesson not to offer this information....I worked with my last job 34 years and forced myself because I had no one else to take care of me....I had great health insurance so it made me go to work for it....thank God later it was against the law to fire anyone who had a disability....I worked and got sick and thanks to my job they had temp disability and.offered a lot of sick days....my last 10 years were bad I was always going out for surgery then going back to work until finally I am on permanent disability and collecting SS and a pension....I look back and wonder how I endured....but thank the Lord I am doing so much better not working....so hopeful you are not alone and you can live long as long as you can with a positive attitude.....I have a great husband who loves me and is there for me so that helps.....Good luck...Zuppie
I was diagnosed with antiphospholipid antibody syndrome 27 yrs ago. I was a “healthy” person until my 32nd week of pregnancy. I delivered a healthy boy at 35 weeks but it was downhill for me since. I am fortunate to have a very compassionate pcp and I also have a complete team of specialist that coordinate my care. Since being diagnosed I have developed stage 3 chronic kidney disease, I have had mitral valve replacement with a mechanical valve, vatious stomach issues, sojgrens, hair loss and a host of other “unexplainable” things. My doctors treat my symtoms as they arise. I have 10 prescriptions daily and some I take 2-3 times a day. Its important to eat healthy and exercise as often as you can and have a positive attitude every day. My husband, my rock, died 4 yrs ago and I felt so alone. But he would have not wanted me to feel like that so with counseling and a supportive family I picked up and moved forward. I now have a very active grandson that keeps me moving. Keep your head up, keep moving as permitted and have faith. God test me everyday and I always prevail! You are definitely not alone.
Hello Hopeful, I was diagnosed two years ago today, but I now know that my first symptoms showed up when I was a teenager, and I'm now 52. So there are many of us that have had lupus for over 20 years who understand how you feel. I'm glad you joined and you'll connect with others you can share with..
Hi See my reply under Worried....Yes 1976 so 20 + years...spent much of my life alone...recently married at 72...I never felt
I could share this burden on another. Luckily we have enough good days to make up for the down time.
I just started on this site yesterday...already I can see how helpful it is to hear others stories and ideas.
My best idea for the day is to get into a pool as much as possible. Recent flare I checked into a hotel and jumped in pool every few hours for about 5-10 min...pool was 82 degrees....felt like ice water...but reduced inflammation....gave me a few hours of relief. There is always hope for a better day.
Hi Lone Wolf, I actually had a pet wolf when a child. Ironic ...I too was a care provider, Dental Hygienist then Chiropractor.
I saw many of my friends die of liver disease and decided to go the non med route as well. Last time I decided to
take prednisone as flare
started with a vengeance ....I am glad I am on only for 6 days...sometimes life is one compromise after another. On my good days I do Tai Chi, dance or roller skate...so I count myself as lucky. The best advice I ever got was from a bird in a tree that said, This is not the way you want to die. I started taking flax(on worried reply and soon took up dancing) Just listening to music and moving a little...letting the music move my body...can be very healing. Thanks for you.
lone wolf said:
Lupie said:So Lone, tell us your secret! What do you think it is that keeps you able to do so much? I know everyone is different, but is there some combination of drugs that works best for you that keeps you going?Hello Lupie: When I was first diagnosed I was full tilt boogie in private practice as a family doc. I chose however, only to practice holistically, and had a lot of knowledge about nutrition, movement, meditation, and hands-on care to the nervous system. I decided to stay true to my convictions and not go down the conventional western road of pharmaceutical drugs. Of course, there are those times that I have taken anti-biotics when the pulmonary issues get nasty. Other than that, I have researched Chinese medicine, and have a wonderful Chinese doc who helps me navigate the world of herbal medicine. I study and practice and teach QIGONG, which I highly recommend, I have learned from Buddhist teachers how to meditate in a real sense, I am meticulous about what I eat, choosing a vegan fare with fish only when I feel the need, and I have a deeply spiritual connection with Lupus, knowing that it is here to be my Teacher. I feel as a scientist, that auto-immune dis-eases speak o the Self yearning to recognize it Self, rather than as the enemy. I live in an inspired and grateful way, and I have never defined myself as a disease. I have had my share of lousy things happen due to lupus, but I feel that because I have never polluted my body with harsh toxins, that I recover better than most people. I lecture often on the merits of cleaning up your life, body, mind and soul Thanks for your interest.BE Well,lone wolf
hello!
I have had lupus since 1992. You are not alone!
I've had 3 very serious flares (kidney failure, congestive heart failure, stroke, anemia, etc) and have managed to get back off the drugs each time. I did a lot of alternative medicine over the years, and now I basically maintain my health by getting enough rest, having enough fun, and avoiding the many foods I'm allergic to. I have not taken immune suppresants (or any lupus drug) since 2007. I still occasionally have problems, like migraines, or joint flareups (when I accidentally - or even on purpose -rarely) eat something I'm allergic to. And the pollen this year really knocked me for a loop. In general, though, I am doing well. Before there was prednisone, people just died from lupus. As much as I hate prednisone, I am willing to take it if my only other choice is death :) So I keep that in my back pocket, just in case. But so far, since my last flare, I've been able to stay off the drugs by staying off the naughty foods. My inflammation level is still too high, so I have a plan to work on getting that back to normal.
well, too much about me. just wante to say, yes, there are other long-term survivors on here!
Thanks Shila that is very good info on the 100 yrs with auto-immune. I never expected to live till 72 yrs. I find after a bad face flare that lasts about 6 weeks with no meds and 2 weeks with prednisone...that my face looks like I just got a chemical peel! Only done from the inside not the outside. Except for a few attempts for the Wolf to catch me...I went five years this last time between bad flare-ups. I know others are not so lucky and I wish there was more we could do to help with their pain and frustrations.
One of the sayings I use when down...and on the cup I drink my smoothie from, " Life is not waiting for the storm to pass...It is learning to dance in the rain"
I normally take very few meds...only a water pill for HBP. I dance and take Tai Chi...am on my way to gluten free and
just this time took prednisone a few times for this past flare up...it has cut time in half. I do not want to take something that is going to add more toxin in my body on going. I was taking probiotics (not meds but natural) when GI problems NOW I am going to take them all the time...as 70% of immune system is GI oriented...also cutting out sugar added to things to 22 gms or less a day...not counting the sugar in fruit and veggies. Thanks for your share. Dee
Sheila W. said:
I was diagnosed in 1981 but my Dr. thinks I was born with it, so 54 years. Then my Mom and siblings got tested, they have it too! My Mom is 81, and my Aunts and Uncle who all have auto-immune disease are close to 100. When I was 30 I went into a depression, thinking that I have to deal with the pain and isolation for 50+ more years, but then i learned to just take it 1 day or even 1 hour at a time.